Beyond Stroke Survival

Recently on social media, I came across a girl who carries a giant binder filled with her complete medical history. This binder helps her effectively communicate with doctors and ensures she gets the care she needs. As I spend more time in the hospital with my mother, having the same conversations repeatedly about her symptoms, history, and test results with various doctors, specialists, nurses, and aides, I realize how genius this idea truly is.

Staying in the hospital with my mom is exhausting, and anything that can streamline communication with healthcare providers sounds like a game-changer. I’ve already taken the first step by requesting my mother’s medical records from all the facilities she’s visited. The challenge now is organizing everything so that it’s not overwhelming, but I’m confident it will be worth the effort. Having a well-organized binder could help my mom receive better and faster treatment.

I understand that most of this information is already in the hospital’s system, but it often feels redundant when they repeatedly ask, “What can you tell me about her medical history?” With this binder, I’ll be able to say, “Everything is summarized on this page.” I’m also curious to review everything documented in her chart that doctors and nurses haven’t discussed with us. From what I’ve seen on social media, these records can reveal a lot. For instance, I watched a video where a girl discovered that years before her knee surgery, her medical notes indicated her knee was dislocated—crucial information that had been overlooked. Considering I’ve only recently become involved in my mother’s care, there’s so much about her history that I still don’t know, and I don’t want to miss anything important.

While there are apps like MyChart and Wingspan Health that claim to help with this, as mentioned by DocSchmidt on TikTok, there’s something reassuring about having a physical binder. It doesn’t rely on an internet connection or an app’s ability to pull the correct information. Knowing that all the vital information is there because I put it there, with physical copies in hand, offers peace of mind. I’m even considering making signs like “I have aphasia” and “This is what aphasia is…” because, despite my best efforts to inform the staff, there’s always someone who isn’t familiar with aphasia or how to handle it—even in a hospital setting.

I’m excited to complete this project and see how it improves my mom’s care. If you’re interested, check out these TikTokers and their medical binders for more inspiration.

@jessicawetz6

Replying to @Jessi ✨️ I only show doctors other doctors words so they cant argue with me. My binder is chronological doctors reports and test results about my chronic symptoms, and medical scholarly articles written by doctors that match. Its never my word against theirs, its theirs against other doctors research. Its not me self diagnosis, its the researches conclusion.

♬ original sound – Jessica Wetz 🍉#6

Tips for Organizing a Medical Binder